Maya was diagnosed the day after her 5th Birthday on March 16, 2015. On her Birthday, we had a party at a Bounce House place where she was running, climbing, jumping, playing – enjoying her party. She had been tired the week before, but seemed energized by the party. After the party, we noticed she was breathing heavy – but we figured she was tired from the big day. It only lasted a few minutes and then she seemed fine. The next morning – she woke pale, tired, but determined to go to school. She did not feel great at pick-up, so we decided to head to urgent care to get her checked out. We were only at Urgent Care a few minutes, before we were told to drive directly to the ER at the Children’s Hospital. Once at the ER, we discovered she had a collapsed Lung! and her counts were all over the place. She was put on Oxygen and arrangements were made to move her to the PICU. During all of this – we were told that she had Leukemia and everything would begin the next morning once we were in the PICU.
The next morning in the PICU – they went to do a chest tube, PICC line, Bone Marrow Aspirate and spinal tap, but she crashed almost right away and couldn’t handle the “sleepy meds” (as Maya calls them). They decided to do all of it only using local with her awake! She did great – in the middle of the chest tube procedure she started talking to the surgeon. He wasn’t listening (not usual for patients to talk to him) – so she started yelling “Excuse Me – I didn’t Order this!”. It was the first true glimpse at how she would handle everything. She would have a voice, would want to know what what going on and do it all with a smiles and sense of humor.
Her first 15 months of treatment were tough – with over 140 nights inpatient, plus endless days sitting in the Day Hospital getting transfusions and chemo. We tried to make it fun – calling our time in the hospital “sleep-overs” and looking forward to going to the playroom each afternoon. We looked for ways to make the long days fun – with interesting games on the iPad, getting to watch fun movies and the Disney Channel on the Hospital TVs and building tons of Legos. The second half of treatment was very smooth, she was able to attend 1st Grade, after missing all but 6 weeks of Kindergarten. For a kid who loves school – it was a welcome distraction.
We feel truly lucky that she was able to come out of treatment relatively the same – with some additional physical and emotional scars. She has a big heart, is super smart (reading 2 grade levels above, even after 2.5 years of chemo) and always has a smile and hug. Our family was changed – our son was only 2 when she was diagnosed – which has changed him in good and not so good ways. He is so loving and empathetic, but he carries lots of anxiety and worry around in his now 5 year old body. It is wonderful that our kids have a fierce love for each other, but we hope the emotional scars will begin to heal over time.
The hope for our family is that this experience will change us for the good – that we can learn how to be effective advocates for others going through similar situations. That we can help spread awareness the kids get cancer too.